Thursday, July 20, 2017

In the days before a major surgery, we fall into an uneasy rhythm. Neither of us really sleeps well. One of us is worried about the waiting and then the caregiving and then the weeks and weeks of single parenting. The other of us tries to alleviate his fears about all that could go wrong by working overtime in futile attempts to do all the things that need to be done while also nursing an increasingly uncooperative back. Pain and guilt and disappointment are not insignificant factors in the calculus of our arguments in this week before surgery.

I'd be lying if I said that the dominant emotion I feel leading up to surgery isn't anger. There's an anger bordering on rage that percolates in the back of my mind and settles into my stomach in ways I never fully anticipate, and I fail to suppress it completely. At unexpected moments, it spills out onto Ren and the kids, paving the way for guilt and fear to coat the nooks and crannies of my consciousness.

The thing no one tells you about being a caregiver is that it will make you mad, and it's an anger that has no place to go. I want to be mad at Ren for having such a shitty spine and for convincing me that he would always be the healthy part of our "in sickness and in health." I want to be mad at the kids for not rising to the impossibly high levels of cooperation and performance that times like this require. I want to be mad at friends and family who don't reach out or offer to help. I want to be mad at all of you whose lives aren't completely upended every 6 to 18 months and who can imagine what the future will look like well enough to plan for it. But, I know this anger is inappropriate, so I try to distract myself with mindless activities. I spend too much time on Facebook and look for reasons to run useless errands. I obsess about stupid stuff. I pick fights with Ren.

Do you know how to remove a blood drain? Can you tell the difference between a skin irritation caused by adhesive and the beginnings of a wound infection? When is lethargy the sign someone is exhausted from major surgery and its recovery and when is it a sign of something more serious? Does unexplained pain merit a trip to convenient care, or does it mean you should go straight to the ER? What about a cough? Is it allergies? A cold? Or the beginning of so-call hospital induced pneumonia? These and many more are the kinds of questions I am expected to be able to answer when I am put in charge of the care of a person who's just had another major surgery, and, while the surgeon, your primary doctor, and the hospital are great at making sure you're well enough not to die on the operating table, they become surprisingly hands off once you're sent home. I suspect that maybe what I am angriest at is a healthcare system that sends people home after major surgeries--which are benignly referred to as "procedures"--while trying to convince them that they'd be "more comfortable" at home or that short hospital stays are "safer," a healthcare system, coincidentally, that also provides so little support for families of kids with special needs that a major health crisis like this makes it nearly impossible to move forward. But, I'm not supposed to be political. This is a humor blog after all, so forget I mentioned it.

By the day of surgery, I will reign in all of these frustrations and fears, and I will sit with Ren for hours as they shave and prick and pull and ask dozens of the same questions. Then, I will watch as they use a marker to map their plan on his back like a football coach diagramming plays. When they wheel him away already hooked to an IV with his head in a surgical hat, I will walk to the waiting room and wait. As the hours pass, I will struggle but ultimately fail to suppress my anxieties. During the impossibly short few days he stays in the hospital, I will keep him company and advocate fiercely for him. On day four (!!), he will be pushed out in a wheelchair, helped into the car, and propped on pillows, and I will drive him home, slowly, avoiding bumps and taking the turns along the way carefully, hesitantly. Once we're home, I will support his full weight as he gingerly makes the seemingly epic journey from the garage to the bedroom where I will help him get comfortable in bed and where he will essentially stay for months until he is ready and able to rejoin the world of the living.

In the meantime, life will go on. The kids and I will figure out how to find joy and have fun and include Ren where we can. I will remember what it's like not to feel so raw and vulnerable. And,(hopefully, most likely, assuredly) I will find my sense of humor again.